Welcome to the latest edition of the “What is it really like…” series, which explores the less talked about or understood issues connected to parenthood. This edition takes the subject of autism in children, and what it is like to parent a child with autism. Although 700,000 people live with autism in the UK, it is still not a very well understood matter by those who are not touched by it directly or indirectly, with many myths and misconceptions surrounding the condition.
I’m therefore delighted to have the opportunity to interview Wendy from Spectrum of Life to ask her some candid questions about what it’s really like having a child – or in her case, children – with autism, with the aim of eradicating some of the misconstrued ideas and negative perceptions that can often be associated with autism….
Can you share a little about your family, and how your autistic children fit into that?
I have 4 children – 2 boys and 2 girls. My oldest daughter is a neurotypical teen. My 3 youngest children have autism, my youngest daughter ADHD with autistic traits. Our lives are controlled by the children, we can’t go out on the spur of the moment because it would cause too many meltdowns. Everything is on their terms to help keep them calm. My teen can’t have her friends round as the others don’t cope with strangers in the house.
You have two boys who are autistic – in each instance, when did you suspect that they could in fact be; and did you know much about autism before your first child was diagnosed?
With Luke my oldest son I had no idea that he was autistic, it was in fact a health visitor that first realised Luke was different. I knew nothing of autism and what it meant. I read lots of books to try and help Luke in his world. Up to 5 years old he was non-verbal and the only way he could communicate was through pictures and screaming. We learnt that different screams meant different things.
With Zak my youngest we almost knew straight away that he had autism. By this time I had learnt a lot about autism and the traits. Zak presented these as soon as he was born. he didn’t likes to be picked up, thrived on routine. Zak was 18 months when he was officially diagnosed with autism.
How does having two boys with autism affect your family life? And how has it affected your relationship with your partner?
Everything has to be planned out to the minutest detail and things constantly explained. Me and my husband can’t go out on date nights. We work as a partnership and do everything together as a team.
What are the greatest challenges of raising children with autism on a day to day level as a parent, and then also with regards to the “bigger picture”.
People’s ignorance towards autism – I wish they would stop staring at the children when they are out or the snide comments. The bigger picture is that society will accept the children for who they are regardless of their disability.
People often talk about the down sides of autism, but the less talked about flip side is that there are also unusual, quite shining, often beautiful traits that come with autism too. Could you talk a little about that with respect to your boys?
Luke loves maps and will look on google maps then get a street map and pin point the exact location of where he was looking. He can direct you to most places in the UK! Also he can draw very detailed maps. He has a thirst for knowledge and loves finding out how something works. Zak loves Ipads and from a very young age has been able to use an Ipad and reprogrammed it. Zak loves technology and they both like to see how things are made and how they work by watching programs on Discovery Channel like How it’s made and Myth Busters.
What have you learned from raising children with autism?
I have learnt a lot from the children. Especially how they see the world differently and see the minutest detail. I have learnt to think on my feet and outside the box as the obvious solution is not always the answer. Take each day as it comes because you cannot predict autism and what worked yesterday might not work today.
I often read that one of the most frustrating things about raising children with autism, or special needs in general, are how other people engage with you…the not knowing how to react or what to talk about with you. Could you share a little on that…
Ever since the children were first diagnosed I have seen friends and family disappear. It can make you very isolated – for instance, you are that mum that stands in the playground on your own. Your children don’t get invited to play or to parties. The worst thing someone can say is don’t worry they will grow out it. This really gets to me. I wish people would just ask me. People tend to steer clear of others that are deemed different.
Do you feel you have been well supported in your journey as a parent with autistic children so far?
Yes, until the child gets to 5 years old then all previous support is stopped. There is still a lot of ignorance towards autism in the world. We have been turned away from holiday clubs because the children have autism. I found support through social media and talking to other liked minded parents in similar situations.
How do you find people’s understanding of autism these days? Is it much improved and better accepted, or is there still a long way to go?
It is getting better but there is a long way to go for people to accept autism in its entirety. Programs such as the Autistic Gardener are helping change people’s perceptions about autism. I think we need more programs like that. Children should be accepted for who they are not be isolated because they have autism/special needs.
If there is one thing you could say as a Mum with children on the autistic spectrum to mums of those who are not it is….
Accept the children for who they are, try and learn to love the child underneath not the disability.
What advice would you give to those parents who either suspect their child might be autistic, or whose child has recently been diagnosed?
You are not alone, ask if you are unsure. Someone should be able to help. Don’t be afraid to talk about autism – the good and bad days. You will be surprised how many people want to support you and share the smallest triumphs with you.